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Susie's musings

Party’s not over yet…

It was wonderful seeing Mom who is very engaged and happy. We read a book called Dilemma by Father Albert Cutie (accent over the e) that sparked a lot of discussion…  together. Have you ever read a book with someone…?  Mom headed home today with my sister and brother-in-law, mom’s care givers, but we await my niece Erin who is coming from St Petersburg. Jenny (my niece) and I will cook dinner for Erin and sister Sarah. Jenny and I are black and white, yin and yang. Opposites. She’s a good girl who doesn’t get riled when I move quickly or act bossy…. We took her car to be fixed and I found her upstairs and I said, "come ON Jen, let’s get going"… "I’m going to see a boy, I have to put on makeup" was the reply. "Oh, I guess I better get out of my rags then," I thought as I changed out of paint spattered tee and paint spattered shorts. How is it everything I own has paint on it?  Jenny and I painted a big painting for over her daughter’s couch. We painted fishes on the bottom of the ocean with lots of bubbles. I think it was rather nice.   And our interaction was hysterical!!!  Little grand niece Lilly and sister Sarah joined in so I hope the owner of the gift (Erika) loves it!  We’re off to the beach (Sarah lives 6 blocks from the Atlantic!) Love to all and please pray for travellers tomorrow (Wednesday) Love susie

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Amazing Grace

Dear friends and family. Today is my mother’s birthday and I am with her in Jacksonville. My sister and brother-in-law (Mom’s full time care givers) drove mom to sister Sarah’s last evening and we had a big reunion here in Jax. Then mom and I slept a long beautiful sleep in Sarah’s big bed upstairs. Mom is still sleeping (which is why she can stay up late at night…). Today we plan a celebration with lots of Sarah’s kids and grandkids and of course, us, the 3 sisters. I am so blessed and can only offer thanks to our God for giving me this beautiful day.  I spoke to Chuck yesterday when I arrived safely in Jax (he is "all alone" at the lakehouse this weekend…) he had taken a nap and was preparing to go to Physical Therapy.  It is time for him to be in the nest alone and to leave the nest on his own, but he does have 3 neighbors watching out for him!  If he knew the mothering I order up for him he would freak! I have let him out of the nest alone and you have shared my angst in this blog in the past, but always there are beautiful loving "mothers" nearby.  Thank God for healthy husband and good friends. Happy birthday and love to you all. Susie

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Lunch and memories

Today Chuck, Thelma, and I went to the Big Pine Cemetary to "inter" Aunt Trudy next to Loretta, her twin sister. Loretta and Trudy are both in green boxes within their niches next to each other with CP beside them. Trudy’s green box honors the fact that she died on St. Patrick’s day. We are remembering Aunt Trudy over lunch as she loved to go out for lunch.  Chuck is now meeting with people to do some structural repairs on Aunt Trudy’s house and we will move in there and put the "big house" for sale on the market. You will probably be able to see it if you google water front properties for sale in Big Pine Key. We want to build a nice guest retreat in the downstairs that will open to the yard and the open water.  We have some work to do on the house and I am preparing for a book talk in Miami on April 9 on the new book by Pope Benedict called Jesus of Nazareth part two. … Well dears, it is sunny and beautiful on Big Pine Key and all is quiet. God bless you and thank you for continuing prayer.

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Susie's musings

Turning another corner

Our English friend Sally provided the opening words for this blog: "no sooner than you turn one corner you bump into another
wall. We are glad Chuck is coming back strong for you all but it will take time. Remember to rest your self.
We presume you are in the Keys with Aunt Trudie; remember us to her and we hope she sleeps peacefully and deeply watching the view over Bogie Channel. Many a sunrises bring back such good memories of Christmas Past and the childrens’ laughter by the water on bikes and in boats."
And isn’t this what Aunt Trudy wanted? good memories on Bogie Channel. Aunt Trudy passed away quietly in her own home, in her living room that overlooks Bogie Channel, at about 5AM on St. Patrick’s Day March 17, 2011. Niece Thelma Ann and friend Dorothy were with her. (One of St. Patrick’s symbols is a boat.) May Trudy be carried to the face of God by angels, in a boat over Bogie channel. Although, Aunt Trudy didn’t like riding too much in boats…. angels will be gentle. God bless Aunt Trudy.
Chuck is very well. He is walking right now with friend Dave from Maine who is still with us. Chuck’s fog has lifted and he seems so much more the same with only lapses in short term memory that he doesn’t even recognize… Probably only the wife recognizes the lapses. He will continue PT and OT and walking. We will go to Big Pine this morning and meet up with Chuck’s cousin Dennis from Connecticut and friends who arrive tomorrow from Iowa. Life is a circle. Live and thank God for sun rises. Amen.

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Susie's musings

The mantle of the Blessed Mother

My dear friends and family. I am so blessed to have been able to learn about the comfort faith in our Creator God brings.  I am sitting right now with Aunt Trudy. Holding her hand and comforting her as she is very sick in the hospital. She had pneumonia and lost the ability to walk and now she is very frightened and anxious. We are preparing to take her home to Big Pine Key with Hospice and a full time caregiver. She never wanted to go to the hospital and definitely not to a nursing home and we are respecting that wish and treating her with respect. She might recover at home, and if not then what a most beautiful setting to spend one’s last days as looking out over Bogie channel where we often see porpoises.  What I learned, and what I tell Chuck that I did with him when he couldn’t sleep and he was so anxious in the hospital, was that I put my hand on his chest and I called upon the Blessed Mother to wrap him up just like she does with the baby Jesus in so many statues and pictures we see. Any of us can ask for the Blessed Mother to help us… Just cover us and hold us. Try it with a small restless child. Try it with an anxious old folk….  I am relieving Thelma for the day. I left her at home on Big Pine Key to do her taxes. I wanted to visit Trudy for a while. When I got to the hospital at noon Trudy was crying and twisting and the nurses said she has been like that all morning saying, “I can’t do this..” “Well yeah, who can do this?  Hospitals are awful places especially when you can’t walk or think straight.” So I asked for a relaxant and indeed Atavan is prescribed so we got fixed up with a little relaxer and then the techs did some hygienic things with Trudy and now I am just holding her hand and when she gets agitated, I put my hand on her chest and tell her… “It’s alright, sleep, sleep…” While I was doing that a nurse came in and asked if she could pray… sure. So she called on Jesus and she prayed for Trudy and Trudy moved her lips as if she were praying too. I told Thelma Ann (Chuck’s sister) that their mother couldn’t talk and was so confused, but she could say the Our Father when I asked her if she wanted to pray.  My dears. If you are not a person of faith, please know first that you are not alone. I would say more, but that is enough for now.

Yesterday Chuck was so “on.” We couldn’t understand why Trudy had lost so much ground going from talking and knowing people to confused, agitated, screaming, crying and not knowing Thelma or Chuck. Meanwhile, Thelma could not get the nurses to give her a doctor’s phone number… “What happened?” is a normal question when anyone goes downhill so quickly….  I used to bother the nurses minutely when Chuck had bad things going on and the doctors had to speak to me, but these doctors are too busy and they sneak in and out of the hospital in the dark of the night…. So, everyone got marching orders.  Thelma went to the billing office to be sure they had all the proper information on Trudy’s supplemental insurance. (It is absolutely necessary for us to purchase a policy to cover “the 20% medicare won’t cover”. And we sent Chuck to get medical records with his power of attorney for Trudy. (It is absolutely necessary for us to have power of attorney for each other.) Well… he made a stop at the Risk Manager’s office and talked lawyers and names she knew. Just chatting like Chuck can do… When he came back we began to get nurses coming in and but we did not get to see the doctor… he had “emergencies.” This same thing happened to me with Chuck and it was infuriating. We finally left the hospital as Chuck needed to get out of there. He’s still recovering and he still needs rest. On the drive home from Key West to Big Pine, the doctor called and spoke to Thelma, Karen Skipp called to advise us, and Chuck called Hospice of the Florida Keys. Before we got to the Fish shop where we purchased stone crabs, we had things worked out for Trudy to transfer her to Hospice at home (probably this coming Wednesday). Thelma is really being a trooper as the full time family on site. We need a few days to get a hospital bed and arrange for care. I feel very strongly and feel very proud that “Chuck is back!”   I meanwhile have two books to read. One for my St. Augustine’s book club by Tuesday night (about 20 pages to go), and one called Jesus of Nazareth From the Entry into Jerusalem to the Resurrection (volume 2 by Pope Benedict – he is an excellent writer) that the sisters at Paulinas book store have asked me to read and give a book talk on April 9.  I will alert you as to the exact date and time so maybe some of my family and friends can attend, cheer, and buy my book too. (I’ll even sign it!) God bless you my dear friends and family. Keep praying for us as we’re going through a lot here, but we are not alone.

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coming around the mountain…

Hi dear friends and family. Sometimes we can’t see the other side of the mountain until we round the bend… and there it is! "our goal." I can’t say reaching the goal will be easy, but we can see the final path. Dr. H, our highly recommended neurologist, called and I told him how lousy Chuck feels when he takes the Kepra… Chuck wakes up, feels great, walks with Dave and does shoulder exercises feeling good, eat breakfast and take pill…. feel lousy (oh I hope it’s not my cooking….) so go for a 3 hour nap. And repeat in the evening. Watching Chuck try to counter the nausea and odd feelings is painful… You can see the drug working. Cousin Carol pointed this out when she was here. He gets lethargic in the morning about 1 hour after taking the pill. So I just told the doctor what I just wrote. Can we start to reduce the meds with a goal to stopping the meds? yes. Starting today Chuck takes no more Kepra except at night and stops totally in 2 weeks. So… we have to watch him. watching…… Poor dear still can’t drive for a month and has to take it easy for a while longer until we get clearance to do whatever it was he did before. We will see Dr H April 1 (really – no fooling.) The rest is up to the angels to clear his head and move forward. Meanwhile I’m hacking and choking because all the mango trees in the neighborhood are in full bloom. Time to turn on the air conditioning. (oh? is it still winter out there?) Love Susie

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When we get on our knees

Hi dear friends. When we get on our knees we are so low that we don’t see that we are giving all to our Creator who reaches out to touch us all the time. As I said in the Baptism class I teach… He’s always pouring out his spirit, it’s just that I am too busy looking at me and my troubles to notice. But I remember my friend Peter who saw me so desperate and scared that he put his hand over mine and stopped my blubbering with, "Susie you need to pray." It’s almost like, "give it up kiddo, you can’t do anything much except keep going along… so pray." Is it just pray and ask for help? I’m not sure what it is, but things go on. We have an appointment with the neurologist we had at Baptist (Dr H) this coming Thursday and I think Chuck is so good without the meds that I’m going to ask if there is any good in the meds – do we really need them? If not, then….. let Chuck fly without them. We’ll watch Chuck. He’s not running or jumping. He’s napping daily and being good. I’m fighting the battles gently and he seems to be recovering physically. I will get back to my watching and not worry when he notices "you’re watching me…" ! Also yesterday the silent workers comp people called. It’s been like water torture working with the worker’s comp people. If they approve the claim all bills will be paid. If they don’t approve the claim (and they have until April to notify us) then we owe a lot of money. Well?????? I’ve done everything they said except I chose to stay with the neurologist we had in the hospital (highly recommended Dr H.) Workers comp came up with an alternative in Broward county but never made an appointment (well they did but I never got the notice of appointment) – which is a good thing because driving to Broward county is NOT something you want me to do too often all distracted and anxious as I was (am). Anyhow. They called and they will be sending a private car to pick us up and take us to their Broward county specialist on March 1. I figure if Chuck needs ongoing help, let the worker’s comp doctor prescribe it and I can give up the expensive out of my pocket specialist… God works for those who love him.
This is a very special time when Miami is the only place in the states that has temperatures of 70-80 and indeed on the weather map: it is so! As I was reading this morning my thoughts were broken into…. with song. I listened and sang out! "the Martins are back!" We have a little special bird house out in the back by the lake. Every year a little brown/black bird flies up from Brazil to live in our Martin house from about this time (when it starts to be warm again) to mid June. They sing and sing!!! They have little singing parties and chirp and fly around and have babies. Every year we love them when they are here and it’s sad when they leave. Their return is like someone makes a promise and it’s kept. Life goes on and all is well. Chuck and Dave are out walking and Chuck will be OK. I’ve been a little down lately and now I have a drippy head cold, but I thank you and want you to know… all’s well. Our yards are lovely because Dave and I have been tending for a lake wedding. Life is good – Thank God. Love sue

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Need some prayer

Hi dear friends and family. I’ve been thinking we need to pray more. That will buttress me up… I guess even though I know this recovery thing will take a long while and we might get a little different Chuck back … even though I KNOW that… I’m not acting so. So I pray for patience and gentleness in the face of our Chuck who says he doesn’t want any fussing, but then says I don’t take care of him. Who says he doesn’t want ice or ibuprophen but then says I never ice his shoulder… yikes!!! I come at him swooping in with ice and he grumbles like a son of a gun and says I make it hurt. Oh boy am I growsing today!!!! That’s why we need prayer. I’m praying that Chuck is just foggy from the seizure medication which he still takes 250 mg morning and night and then gets foggy and "feel lousy" … I hope that the 250mg Kepra is what is making him foggy anyway…. I have considered just stopping the med but I’m also thinking I crossed the doctor line before and maybe just this once I need to ask the neurologist and then listen to him… …. I’ve been asking for another meeting with neurologist to reduce even further the med and consider stopping it so Chuck can be without drugs to let his brain start working at 100% and also to see if thyroid number comes down. Chuck is at 5.7 which is considered hypo thyroid, but some studies say brain trauma can affect thyroid. I think we need to see what the unmedicated person can do and then move from there. And then we can see what we’ve lost and work on that. Send advice and pray – I’ll accept both. Love Sue

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Moving right along with Susie

Hi dear friends. I jumped the gun a little bit and our friends advise Chuck shouldn’t be driving without express consent of doctor… Since we forgot to ask the doctor for permission during our visit, he is grounded for a while and I’m still mistress of the auto. He’s feeling lots better; he says the fog has lifted somewhat with meds halved. Chuck and Dave are still walking almost every morning and Chuck is doing shoulder stretches and PT and OT 5 days a week. He has done everything the OT people have to offer, his handwriting is neater than it has been in years, and now today he is going to teach the OT doctor how to do Suduku (Chuck is still having trouble with Suduku so the doctor thinks he can break through the fog with teaching.) We’ll visit Thelma and Aunt Trudy in the Keys this weekend where the clothes washer at our house just broke. It’s always something…. Today is a beautiful sunny day – has been a beauty all week. God is good with flowers on my little lake. God bless you dear friends and help us to pray. Love Susie

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I now will need rehabbing

We met with the neurologist in his den and he did what I wanted… the neurologist has cut Chuck’s seizure meds in half… how’s that for getting exactly what I wanted? … What fun it will be to have Chuck not so sleepy or anxious. He drove the last two days and he is driving a little fast. "Oh," you say, "why doesn’t Sue do something about that?" Have you ever seen a 100 pound woman holding a full grown Saint Bernard on a leash? You know darn well when he wants to go, he’s going. Chuck has driven to rehab and back. It’s about 2 miles on 107 Avenue to Kendall drive. Straight shot, but this is Miami where aggression is top of the line, and the speed limit is only 40. So more prayer please for our boy who is off to OT while I stay home and wait for someone who is coming by to get paid for a job he did for us. Chuck really likes OT. He doesn’t have his handwriting back yet, and they are playing mental agility games with him. Keeping it light. meanwhile… the shoulder hurts like… well think of your worst hurt. He was really groaning with pain so I managed to get 600mg Ibuprophen into him at great protest (It’s what the doctor ordered and neurologist says OK). Chuck is the man who doesn’t take medicine. The shoulder doctor said 800mg three times a day… I barely got 600mg in once. Actually the next time I asked, and I don’t ask often, the shoulder felt better.

OK so what about me? I have changed roles from Mother dog protecting her man in the hospital system… and I have become the PT (Physical Therapy) mother dog. He has to work that shoulder twice a day at least… and I feel bad when it hurts, but the alternative is manipulation by the doctor under anesthesia… NO WAY. When do I get rehabbed? Soon, I know. Happy hopefully warm day, Love Sue